Family Conferences

Among its various educational activities, CurePSP sponsors and organizes family conferences across the country, providing people with the opportunity to learn more about PSP, CBD, and MSA and to develop a sense of community. We recognize that these diseases present daily challenges for patients and families.

Request Information

CurePSP has collated the latest, most up-to-date information on PSP, CBD, and MSA available, and is happy to send all material, free of charge, upon request, to the address you provide in the form below.

Centers of Care

CurePSP Centers of Care are medical centers recognized as being able to provide quality care for the specific needs of PSP and CBD patients. This allows us to provide recommendations to patients on where they might find suitable care.

Respite Services

CurePSP has created the Cherie Levien Quality of Life Fund to ease the financial burden of getting professional, in-home respite care. Our goal in developing the fund is to reduce the stress that is often experienced by caregivers.

Support Network

CurePSP encourages and organizes activities that foster face-to-face communication, exchange of ideas and information, and interaction for comfort and mutual benefit to group members. The groups are for caregivers, family members, friends, and people with PSP, CBD, MSA, or a related disease. There are three ways to connect.

CurePSP Centers of Care

CurePSP Centers of Care are healthcare centers recognized as being able to provide quality care for the specific needs of PSP and CBD patients. This allows us to provide recommendations to patients on where they might find suitable care.

Personal Stories

Each family who is on this journey or has finished this journey has learned a great deal, often with much frustration and effort. Caregivers or family members often draw satisfaction by sharing their stories; we have featured three of these below.

Mary Lou Burhoe

Mary Lou Burhoe, wife of CurePSP Board Chair Emeritus John Burhoe, passed away from PSP after almost 45 years of marriage. Here, her husband tells the moving story of their life together and the poignant last years of their journey.

Kathryn Leigh Scott

Geoff Miller, founding editor of Los Angeles Magazine, the first city magazine, and lover of jazz, good beer and the good life, passed away after a battle with PSP. Here his wife, actress and author Kathryn Leigh Scott, tells their story.

Patient Resources

Prime of life neurodegeneration imposes not only suffering for the patient but crushing burdens on families and other caregivers. CurePSP is the place to turn to for people affected by or involved with PSP and other prime of life neurodegenerative diseases.

Looking for More Resources?

Network of Support

CurePSP has a dedicated network of volunteers who have experience with PSP and related diseases and a commitment to help those who are now suffering. These volunteers are located in most parts of the country and in some international locations. They facilitate in-person groups and online gatherings as well as providing telephone support. We urge patients, families, and carepartners to take advantage of this unique resource offered by CurePSP.

Smart Patient Forum

CurePSP is proud to partner with Smart Patients to bring you this forum. We hope to create an online community where patients and families can learn and connect over the symptoms and effects of prime of life brain diseases.

Caregiver Resources

Caring for a loved one can be very rewarding, but it also involves a lot of stress. Caregiver stress can be particularly damaging, since it is typically a chronic, long-term challenge. You may face years or even decades of caregiving responsibilities. It can be particularly disheartening when there’s no hope that your family member will get better.

If you don’t get the physical and emotional support you need, the stress of caregiving leaves you vulnerable to a wide range of problems, including depression, anxiety, and burnout. And when you get to that point, both you and the person you’re caring for suffer.

CurePSP offers a growing library of resources to offer caregivers, to aid them in their most difficult moments.